It was a hot summer morning, with the sun beating down on my head reminding me of how my idea of meeting Sonia at her office was a bad one. She had already hinted during our phone conversation that I might have to search for her office quite a bit as it was situated in a narrow, muddy street near Delhi’s Badarpur metro station. After twenty minutes of frantic, perspiring search, I finally spotted Sonia, a man who had put on brick-coloured lipstick and kajal, waving at me from the balcony of an NGO, which is popular for its Targeted Intervention (TI) programme under the National AIDS Control Programme (NACP) that focuses on transgenders, males having sex with males (MSMs), injecting drug users (IDUs) and female sex workers (FSWs).
Sonia is an MSM, and this was going to be my first meeting with one. I was excited when I left my home to meet her, but the rising temperature had mellowed me down.

Although Sonia referred to the NGO as her office, it is a place where her friends – other MSMs and transgenders – work. For Sonia, it has become more of a secret place where she bonds with her friends on weekends. As I came closer to the small, single-storeyed grey building, I saw rickety stairs leading up to the first floor of the NGO. I took the stairs and immediately realised the presence of transgenders and MSMs who welcomed me warmly with a loud hello. Sonia, dressed in a bright blue and red t-shirt, approached me with a wide smile. “Sorry for the inconvenience, please come inside,” said Sonia who preferred to be referred as ‘she’.

I entered and saw a young man and woman, probably in their 20s, sitting in a partitioned area which was part of a bigger room. As I glanced at them, Sonia interrupted and said, “They are the programme head and counsellor of the TI programme.”

I greeted them and proceeded to another corner of the room where two plastic chairs – one broken – awaited me and Sonia. She asked a friend to get me a glass of water. Sonia tried her best to make herself comfortable on the broken chair. I offered to sit on the floor. She refused, smiled and asked me to start with the questions.

“Why did you leave the job of an AIDS counsellor?” My question hit her hard as her smile faded almost immediately. “They don’t pay us,” she said. “Before that, I was a mehendi artist. My talent helped me find work at weddings and parlours. But the money wasn’t enough. So I worked as a sex worker too. In 2014, one of my friends introduced me to a popular, well established NGO. There, the seniors trained me to work as a part of their TI programme,” she said.

Sonia started working as a field officer for the renowned NGO at a monthly salary of Rs 8,000. “I felt respected. My job was to distribute condoms in high-risk areas and after six months when I became a counsellor, I started interacting with HIV+ patients. I used to like that job as I was finally free from all the dirt and struggles of being a sex worker,” she said.

She added that before joining the programme, she was informed by her friends that she won’t receive the salary on time. “I knew there were some salary issues, but initially I received it on time. My parents too liked the job, so I thought of continuing the good work. After all, how bad could it have been,” she said.

The first salary was paid on time, but the problem began soon. “Sometimes they used to make us wait for salaries for six-seven months. Our seniors used to beg us to wait but it was becoming harder and harder for us to survive,” she said.

Sonia finally gave up the job a few months back and returned to being a sex worker. “I didn’t like leaving that job. I don’t like it but sex work has good money. It is not necessary to sleep with the clients. Sometime they just ask us to entertain. Dil nahi manta par dimag toh kehta hai ki karo [My heart doesn’t like it but the mind says to do it],” she said.

It is ironical that Sonia found her clients from the same high-risk places where she used to go for condom distribution. “I knew those people, so it wasn’t too difficult to get back to them,” she said. “My clients keep asking me why I left a job which had so much respect. Earlier, I used to take pride in the fact that I was doing a good deed but what can I say now? I have to tell my clients that I need money to survive and good deeds are just not enough,” she added.

I asked her why she didn’t try to get a job elsewhere, to which she said: “Humein kaun naukri dega, madam? Humein toh vaise bhi apni pehchaan chhupane kay liye raat ke andhere mein kaam karna padata hai [Who will give us jobs? We anyway have to work in the dark to keep our identities hidden].”

After a brief pause, Sonia opened up more. “It is still easy for us to survive. The problem is with the programme heads and counsellors who are straight (heterosexual). They are still working on the programme without money and proper working conditions. You can see this place. Look in which condition they work,” she said and that was when I got up from the chair to take a look around the room.

There were handmade charts and posters put up on the walls from which the paint was peeling off. There were only two fans in the room which were moving painfully slow. The floor looked dirty and the mattress on the floor smelled of rotten tomatoes. I asked Sonia if I could speak with the programme head and the counsellor.

The programme head overheard and said, “We can talk but it will be a really big trouble for us if you mention our names or the NGO’s name we work for.” Pointing towards a girl sitting across him, he said, “She is a counsellor and we both are straight.”
The introduction sent a roar of laughter across the room. I asked Sonia if she wanted to join us. She asked me to go ahead as she had to take a call from a client.
“What is the need to take their interview? Sex brings them money. It is more difficult for straight people like us who work under this programme,” the programme head said, requesting anonymity.

I asked him about his troubles and his response shocked me. “I haven’t received my salary for nine-ten months now. I have to take money from my parents. I don’t know for how long I am going to be in this programme,” he said.

The counsellor, who initially seemed shy, became more forthcoming after her colleague’s confession. “[Prime minister Narendra] Modi decided to cut the budget of AIDS control programme but did not think about us. NACO wants us to submit the report of targets achieved every month. There is so much pressure. But they are all invisible when it comes to payment. We are working without money and if we ask them about it, they say that we should do our work first. Now you tell us, how long can we continue this work without getting paid?” the counsellor said as tears started rolling down her cheeks.

Consoling her colleague, the programme head said, “This AIDS control programme won’t last long if they keep dodging the employees. So many people have left because of salary delays. We had 10 peer workers who used to help us with the field work but now only three are left.”
Just then I spotted Sonia returning into the room. Looking at her, the programme head said, “I wish sometimes I was gay too. At least I would have had the money to survive and not live under debt.” Sonia laughed and said, “Trust me, this is not what you would want for yourself.”
I took their leave and asked Sonia to stay in touch. She gave me a warm hug and asked me to write about the matter to the authorities. I told her that she should not lose hope.

Situation in India

The 2006 estimates suggest national adult HIV prevalence in India is approximately 0.36 percent, amounting to between 2 and 3.1 million people. If an average figure is taken, this comes to 2.5 million people living with HIV and AIDS; almost 50 percent of the previous estimate of 5.2 million, according to the National AIDS Control Organisation (NACO) data.

More men are HIV positive than women. Nationally, the prevalence rate for adult females is 0.29 percent, while for males it is 0.43 percent. This means that for every 100 people living with HIV and AIDS, 61 are men and 39 women. Prevalence is also high in the 15-49 age group (88.7 percent of all infections), indicating that AIDS still threatens the cream of society, those in the prime of their working life.

While adult HIV prevalence among the general population is 0.36 percent, high-risk groups, inevitably, show higher numbers. Among Injecting Drug Users (IDUs), it is as high as 8.71 percent, while it is 5.69 percent and 5.38 percent among Men
who have Sex with Men (MSM) and Female Sex Workers (FSWs), respectively.

Budget crisis

After the government announced a slash of 22 percent in the National AIDS Control Programme budget for the financial year 2015-16, troubles started. The budget for the programme was reduced from Rs 1,785 crore to Rs 1,397 crore.
In April this year, the budget was more or less restored.

When Governance Now contacted Dr NS Kang, additional secretary, NACO, to enquire about the delay and mismanagement in funds, he casually described the delay in money allocation as “a minor hiccup”. “There is no problem. We have received a budget of Rs 1,615 crore for this financial year and in a few days, we will release Rs 500 crore. Earlier the states used to delay the money but that’s because every state has a different set of priorities. But that problem has been solved now. Everybody will get their money,” he said in June-end.

I told him how some NGOs were taking loans to pay salaries and also enquired about the money pending from the last financial year. He replied, “I don’t know about any NGOs. We will release this year’s Rs 500 crore in a week. They will get the money.” Dr Kang then disconnected the call.
While officials say that salary delays began with the budget cut, they also stress on the fact that the money flow from the state treasury to the state AIDS control societies (SACS) is also a major factor. Before 2014, the fund for the programme used to directly flow from the government to the SACS and then to the NGOs. But later, the government decided to send the money first to the state treasury and then to the SACS.

“When the money was under the control of SACS, there were complaints that it was being misused. There were many grievances. That is why it was decided by the government to hand over the money first to the state treasuries,” an ex-NACO official said.
“However, this change led to a bigger set of problems as the states were not used to this kind of procedure and hence were unable to decide the right time to send the money to the SACS. This led to the delay in fund allocation and many suffered,” he revealed.

The official added that many NGOs complained of not receiving money for eight to ten months. Complaints forced the government to reconsider its decision. And it was decided that from April 2016, the money would directly go to SACS. The monetary problem, however, still persists.
I got in touch with a few NGOs to know whether the scenario of fund allocation has changed or not since April. It hasn’t. “Yes, the money is now being given to SACS. But why haven’t we still got our pending amount?” asks Sanjeev, an HIV/AIDS counsellor at the Anchal Charitable Trust, in Shahdara, New Delhi. “You know how the employees get paid here? Our NGO has taken a loan of Rs 40 lakh! That’s how. Where is the government money? Why is there a delay? For the last two years, we have been struggling for the money and it looks like we have to struggle for a long time now. The government is taking the National AIDS Control Programme (NACP) for granted,” Sanjeev rued.

He said that the NGOs are tired of asking the SACS, as they keep blaming NACO for not sending the money. “If NACO is not sending the money, then who has the money?” he asked.

I contacted the Delhi State AIDS Control Society to check whether they had received the money. “The problem is that we receive the amount in instalments. For this year we have already got one installment and the amount we received was Rs 32 crore. We get the installments quarterly and every quarter the amount we receive is different. And let me tell you, it is just not sufficient,” Dr Praveen, additional project director at the Delhi State AIDS Control Society said. With contrasting opinions and facts, it is pretty clear that the NACP is definitely on shaky ground.

Crisis hits NACP

It is not just the TI programmes that suffered the blow of the budget cut. The training component of the programme, which involved learning, educating and training of HIV counsellors and field officers, was also forced to shut down. “It has been a long time since the programme has been shut. How would’ve they carried it forward when there is no money?” asked Amit, a counsellor at Saraswati Educational Society, an NGO in the national capital.
An ex-official of NACO said that there were instructions to SACS to cut down on their expenditures. “The SACS can’t do anything about it. They have to churn out the money somehow as they have to keep the programme going,” he said.

The AntiRetroviral Therapy (ART) programme in India is also facing a crisis of not having enough stock of medicine. According to Paul Lhungdim, president, Delhi Network for Positive People, many centres don’t receive their monthly supply of ART drugs which causes a great inconvenience to the patients. But he stresses that the problem surfaced even before the budget slash. “Our community members regularly pay visits to ART centres. The problem of not receiving drugs on time has been on and off. We had the manpower then and even the money, but there is a problem with supply chain management of ART drugs,” he said.

Paul added that apart from the budget slash, it is the lack of attention towards the programme that is hindering it. “Many projects were called off. Many TI programmes were shut down. All the people involved in this were directly affected and their struggle continues. It is time to draw the government’s attention towards this huge money crisis,” he said.

Meena Seshu, general secretary, Sangram NGO, said, “Sikandarpur and Pandarpur in Solapur district of Maharashtra are facing a total stock-out as we talk. The problem is with the procurement supply chain management. The drugs that we receive in Maharashtra are first to be disseminated from Delhi which is very time consuming.”

She added that NACO is trying its best to perform but it is the government which is turning a blind eye to the problem on the ground. “When we talk to the government about this, they say everything is being done and that we have to be patient for the money but the ground reality is different and frankly, we are running out of patience,” she said.

Seshu added that even when ART drugs reach Maharashtra, they have to send their own trucks to get the drugs. “Although the distribution of these drugs is supposed to be free but just because of the delay in supply, we have to hire trucks and send them to SACS and get a load of supply. Otherwise how are the people going to survive?” Seshu asked.

In a report by the Centre for Advocacy and Research, the key findings from April to October 2015 reveal that 13 percent respondents across all categories had experienced acute shortage of ART drugs to the extent of returning home empty-handed after at least one visit to the ART centre.

Shortage of condoms

There is also an acute shortage of condoms. Seshu said that for the last two years SACS in Maharashtra has been delivering condoms alphabetically in districts. By the time the turn of a district like Sangli comes, a lot of commercial sex workers are already exposed. “When we came to know about this snail mail procedure of SACS delivering condoms, we started sending trucks to collect the supply,” she said.

While the shortage is countrywide, according to NACO’s weekly stock update as on June 18, 2016, Delhi, Goa, Bihar, Madhya Pradesh, Punjab and Gujarat among others were left with either no stock or a maximum of one month’s stock.

Addressing the UN General Assembly meeting on HIV/AIDS in June, JP Nadda had asserted that AIDS can be ended by 2030 in both India and Africa. However, due to monetary issues, the possibility seems bleak on ground zero.

sakshi@governancenow.com

(The story appears in the August 16-31, 2016 issue of Governance Now)

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